What Is It Like To NOT Be Diagnosed With MS?

The road to diagnosis for MS can be long and winding for many patients. I’m happy for patients who receive their official diagnosis within just a few doctors’ visits. Not happy that they have MS, but happy that they can jump right in and get on with things; attacking the beast with medication, therapy, and determination.

For those of us who are not immediately diagnosed with MS, the feelings involved with the ‘not knowing for sure’ can be frustrating. Especially disturbing is when you suspect that your doctors do not believe you or your symptoms. The worst part may be when there is some clinical evidence that ‘something’ is not quite right, maybe there are lesions in the brain and obvious neurological symptoms, but your tests do not meet the standard diagnostic criteria for an official MS diagnosis.

That’s when the waiting game begins.

I was one of those patients who didn’t receive an immediate diagnosis. In fact, it took more than five years from what was my first obvious and debilitating attack (blinding optic neuritis) to the relapse that prompted additional testing that led to a diagnosis.

But let me back up a little; I actually underwent MRI testing for vision-related issues six years before that pivotal case of optic neuritis. I had been experiencing unusual problems and sought out care at the university school of optometry. The faculty doctor ordered an MRI, but didn’t explain what they might be looking for. Silly 25 year old me didn’t ask enough questions and about a decade later when I called asking for copies of records, they couldn’t be found.

So here’s what it was like for me when I didn’t receive a diagnosis. The first time, I didn’t think much of it. I was just glad that it didn’t seem like anything was seriously wrong and my minor vision problems seemed to resolve. I was too busy being a doctoral student to worry much about it.

The second time through the MRI machine, I knew what the possible outcomes might be because the neuro-opthalmologist had prepared me in advance with information regarding what the test might show and what those results might mean. Of the most likely outcomes – brain tumor, demyelinating disease like multiple sclerosis or Devic’s disease (aka neuromyelitis optica), or post-viral case of optic neuritis – I was glad to receive the most benign diagnosis of an isolated case of optic neuritis. It was definitely better than an ‘I don’t know’ diagnosis.

I was made aware that my risk for developing MS was significantly increased for the next ten years, but I didn’t carry much emotional burden with me based on that information. Why? Probably because there weren’t gobs and gobs of online sources of information available at the time that connected me with stories of other patients with MS who experienced very much the exact same scenario.

If I had read these types of stories, and learned that early treatment with disease-modifying therapy was the best way to reduce the risk of developing MS or delay progression of the disease once it developed, I probably would have been much more anxious about doing something besides a short round of high-dose steroids.

I wonder if the anxiety of not receiving a diagnosis is actually increased because of the amount of information we have easily available. A great paradigm shift perhaps where more information makes one feel less secure.

I feel great empathy for folks who come onto our website, forums, or Facebook page who tell stories of doctors who seemingly fail to validate their experience. Or stories of having symptoms for years and undergoing lots of testing only to not receive a diagnosis, thus no treatment.

It can be enormously frustrating. The feelings of being lost or abandoned in an impersonal healthcare system. The anger at being made to feel a fraud, or that everything is just ‘in your head’ – which it is actually, as in many cases changes in the brain are definitely ‘in your head’ even if they don’t fit traditional diagnostic criteria. The exhaustion from dealing with so many unknowns when you are a person who just wants to ‘get on with it’ so to speak, whatever “it” is, and start treatment.

I’ve been there so I understand. Although I didn’t worry as much 16 years ago when I was diagnosed with ‘not a brain tumor’, I do wish that I had known more about what to look out for regarding other potential symptoms besides paralysis or inability to walk. I might have talked to my doctor sooner during those 5 years between separate investigations for possible MS. I know that my mom worried a lot during those years, but I guess I was blissfully oblivious for a period of time just hoping that I didn’t go temporarily blind again.

Now that I’ve lived with MS for quite some time, and know what it’s like to be ‘in limbo’ regarding unexplained health problems, what would I recommend to others who are experiencing the same thing?

Take a deep breath. Actually take 10 deep breaths like this: relax your jaw, breathe deeply in through your nose, breathe out through your mouth keeping your jaw relaxed. I like to let the air which is being exhaled gently push my lips apart; it seems to reinforce the relaxation and inevitably I feel the urge to yawn after doing this for several breaths.

Be willing to ask your doctor important questions such as these:

Based on my symptoms, what might we be looking for?

What do you expect the tests to show, if anything?

Based on [specific test results], what are the possible outcomes?

If these tests don’t show anything right now, do you suggest we repeat them at a later date? Why?

Do you want me to contact you or call the office if things: a) don’t change, or b) do change? How long should I wait before calling?

Keep notes/records on your current and past experiences: symptoms, activities which seem to cause or relieve symptoms, appointments with doctors, any tests done and their results.

Compile a complete family medical history if you haven’t done so already. What diseases or conditions do/did specific family members have? How old were they when they started having problems? Etc.

Know that receiving a diagnosis of “we need to wait to see if something else develops” and will follow-up in six months, or a year, is a valid outcome. Diagnosing MS is not simple, although it may seem so from our own vantage point and it takes more than just checking off the right boxes.

If you haven’t already, begin to take good care of yourself. Eat well, get regular exercise, stay mentally and physically flexible and strong, practice mindfulness, and surround yourself with supportive and uplifting people and activities. Spend more time experiencing joy in your life; your body and soul will be stronger for it.

I’m sure that I’ve left out many things that an ‘in limbo, no diagnosis yet’ person would need to know or do. What would be your recommendations? Please share in the comments below because your words really do help others who are looking for information and support.

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